Many advocates want to publish their personal stories, but often aren’t always sure where to begin.
My advice is to start with your “why.” Ask yourself: Why do I want to tell this story? Is it to educate others, encourage early screening, influence research, or help another patient feel less alone? Your purpose will help guide what parts of your story matter most.
You don’t have to tell everything all at once. Start small. Focus on one moment that shaped your journey, perhaps the day you received your diagnosis, a turning point in treatment, or the moment you decided to become an advocate. Those moments often carry the most meaning and connect deeply with readers.
It also helps to write as if you are speaking to one person who needs to hear it. Your story doesn’t have to be perfect or polished at first. Authenticity is what resonates most.
Another important step is deciding what boundaries you want to set. Your story is powerful, but it’s also personal. Share what feels meaningful and safe for you. Finally, remember that your voice matters. Patient stories help humanize research, influence policy, and inspire others facing similar challenges. You don’t have to be a professional writer to make an impact, your lived experience is your expertise.
Wenora – You’re an ACE member who’s been widely published, so I wanted to ask you a few questions in the hopes of providing some practical advice to advocates who are just getting started.
How do you decide where to try to publish your articles?
When deciding where to publish, I start by thinking about who needs to hear the message most. The audience helps determine the best platform. If the goal is to support patients and caregivers, I might look for patient-centered platforms, advocacy organizations, or health blogs. If the message is about research, policy, or improving care, I may consider professional journals, advocacy publications, or healthcare-focused outlets.
My first article, or blog, was about 12 years ago with an organization called Fight Colorectal Cancer (Fight CRC). At the time, all they asked was for me to simply share my story. I quickly discovered that writing about my experience was incredibly therapeutic, and it encouraged me to look for other opportunities to share my journey with advocacy organizations.
During that time, I chose to focus my advocacy work with Fight CRC, and they later provided additional opportunities for me to collaborate with researchers on publications in professional journals. Those experiences allowed me to not only share my cancer journey, but also contribute the patient perspective to research and scientific discussions.
Another factor is accessibility. I often consider whether the platform allows patients, advocates, clinicians, and researchers to easily read and share the piece. Sometimes that means choosing outlets that are open access or widely read in the advocacy space.
Finally, I look for publications that value the patient voice. As advocates, our lived experience brings an important perspective, and the right publication will recognize that patient stories and insights are essential to improving healthcare and research. Recently, Health Union created a new community called “Cancer Community” where you can submit articles and share your journey about cancer as a Patient Leader.
Do you write an article with a specific publication in mind?
In some cases, yes, I do write with a specific publication or audience in mind. Thinking about where the article might be published helps shape the tone, the level of detail, and the message. For example, if I’m writing for a patient advocacy organization, I may focus more on personal experience and practical encouragement for others going through a similar journey. If the article is intended for a professional or research publication, I may emphasize the patient perspective in research, treatment experiences, or gaps in care.
Other times, I start by writing the story or message that feels most important to share, and then look for a publication whose mission and audience align with that message.
As advocates, our stories can serve many purposes, from raising awareness to informing research, so I try to think about who the message is meant to reach and how it can have the greatest impact. That often guides where I ultimately decide to submit or publish the article.
When do you contact the publication? Do you send them a nearly final draft, or do you contact them when you’re just beginning?
I think it can work both ways, depending on the publication and the opportunity. Sometimes, an organization will reach out and connect with me and sometimes, I will reach out early, when I’m just beginning to shape the idea, to see if the publication is interested in the topic or the patient perspective I’m proposing. That can be helpful because it allows the editors to provide guidance on the focus, word count, or audience before I invest too much time in writing.
Other times, especially with blogs or advocacy platforms, I may draft most of the article first and then share a near-final version. That gives the publication something concrete to review and respond to, and they may suggest edits or adjustments to better fit their audience.
What I’ve learned is that it helps to review the publication’s submission guidelines first. Some outlets prefer a short pitch or idea before the article is written, while others accept completed drafts.
As advocates, the key is being open to collaboration. Editors often help shape the story so it resonates with their readers, while still preserving the authenticity of the patient voice.
Do you ever struggle getting started – just getting words on paper?
Yes, absolutely. I think most people, even experienced or seasoned writers, sometimes struggle with getting started. When you’re sharing something as personal as a cancer journey or advocacy work, it can feel overwhelming to figure out how to put those experiences into words.
One thing that helps me is reminding myself that the first draft doesn’t have to be perfect. The goal is simply to start getting the thoughts out. I might begin by jotting down a few key moments, emotions, or lessons from the experience rather than trying to write the entire story at once.
I also think about who I’m writing for. Sometimes I imagine I’m writing to a newly diagnosed patient, a caregiver, or even a researcher who may not fully understand the patient perspective. That helps me focus on the message rather than worrying about making the writing perfect.
And honestly, sometimes the hardest part is just writing the first sentence. But once you start, the story often begins to unfold naturally. I’ve learned that our experiences as patients and advocates are powerful, and once we give ourselves permission to begin, the words usually follow.
Do certain kinds of articles or types of writing seem more likely to find a home?
Yes, certain types of writing do tend to find a home more easily. Organizations or publications are often looking for pieces that are timely, relatable, and offer a clear perspective or takeaway for their audience.
Personal stories that highlight a meaningful moment in a patient’s journey can be very powerful, especially when they connect that experience to a larger message, such as the importance of screening, survivorship, or patient-centered care. Articles that combine personal experience with lessons learned or insights for patients, caregivers, clinicians, or researchers also tend to resonate strongly.
Another type that is often welcomed is writing that brings the patient voice into research or healthcare discussions. For example, sharing what it’s like to participate in research, navigate treatment decisions, or advocate for better care can add an important perspective that isn’t always present in traditional publications.
I’ve also found that writing tied to awareness months, new research developments, or current conversations in healthcare can increase the likelihood of being published because it connects to something that people are already paying attention to.
Ultimately, the pieces that seem to find a home most often are those that combine authenticity with purpose, stories that not only share an experience but also help inform, inspire, or educate others.
What else can you share that might encourage an advocate who’s interested in writing?
One thing I would share with advocates who are interested in writing is that your story truly matters. You don’t have to be a professional writer to make an impact. Your lived experience brings a perspective that clinicians, researchers, and policymakers may not always see firsthand.
I would also encourage advocates to start small. It doesn’t have to be a full article right away, it could be a short blog post, a reflection on a moment in your journey, or even a social media post that captures something meaningful you learned along the way.
Another important thing is to give yourself permission to write in your own voice. Authenticity is what resonates most with readers. People connect with honesty, emotion, and real experiences.
And finally, don’t be afraid to collaborate. Many advocacy organizations and research groups welcome patient voices and can help guide you through the writing process. Sometimes that first opportunity opens the door to many others.
You may start out simply wanting to tell your story, but over time you may realize that your words are educating others, influencing research, and helping another patient feel less alone. And that’s where the real power of advocacy writing comes in.
